• From: Doncaster
  • Dilated cardiomyopathy
  • Mum: Kailey

“Kacie was admitted to Leeds Children’s Hospital and diagnosed with dilated cardiomyopathy in August 2008 when she was 10 days old.

Cardiomyopathy is a disease of the heart muscle that makes it harder for your heart to pump blood to the rest of your body. After an increase in respiratory distress she was intubated (given a breathing tube) while a dose of Levosimendan (drug used in acute heart failure) had no effect.

Concerns grew that she needed ECMO (life support) or even a heart transplant, but fortunately she did not require these treatments and very slowly improved with medical therapy. She was eventually extubated just over a month after being admitted, and surprised everyone with her steady improvement. More tests made doctors conclude she’d suffered an idiopathic myocardial infarction. In other words, a heart attack, at just 9 days old.

We finally took Kacie home at the beginning of October 2008 not really knowing what potential there was for further recovery. But at an outpatient appointment in December, Dr Gibbs was delighted to tell us her echo scan looked completely normal. She had somehow made a full recovery!

It was the worst thing we’ve ever gone through as a family, we were young parents – only 20 at the time, and without the support of not only our family and friends but also the staff I don’t know where we would’ve been! They genuinely cared for me throughout Kacie’s stay in hospital – I really struggled at the time.

We stayed in the parent’s accommodation funded by CHSF, which was an absolute godsend and meant we never had to be away from her. We were able stay at the hospital every single night and to be honest we would have been lost without these facilities.

Kacie is now 10 years old and leads a normal life, always full of energy. She loves dancing and recently passed all her dance exams. She’s completely free of medication and her heart still looks perfect. She’s on 3-yearly check-ups now as she’s doing so well! That’s all thanks to CHSF and their supporters.

After Kacie was discharged from hospital, as a little thank you, our family arranged a fundraising event for CHSF and we raised over £3,000. We do hope to do this again in the near future and continue to support the charity.

I also play the CHSF Lottery. It’s a great way to donate to this brilliant charity. For just £1 a week I’m in with a chance to win £100 every week!

We still don’t know how or why Kacie went through what she did but we do know we couldn’t have got through it without the amazing support we had from Children’s Heart Surgery Fund and the hospital. She’s our little miracle.”